There is never a perfect time to lose someone you love.
But for older Australians living within residential aged care facilities (RACFs) and their loved ones, the COVID-19 pandemic has created an unprecedented barrier to the natural process of death and grieving.
Dr Emma Hack, an advanced trainee registrar of geriatric medicine, alongside colleagues from Austin Health, Melbourne, set out to understand the unique nature of grief and bereavement as experienced by the next-of-kin and carers of those living in RACFs.
Hack tells Aged Care News that their study, carried out in late 2020, happened by chance to coincide with COVID’s second wave in Victoria.
“When we did design the study, we didn’t anticipate the second wave. We knew that COVID would probably be a factor, but it ended up being a far more strong factor than we anticipated.
“It really did capture an unprecedented time for the loved ones of those in aged care facilities.”
The resulting journal article, COVID-19 Pandemic: End of Life Experience in Australian Residential Aged Care Facilities, comprised interviews with 41 next-of-kin and carers who encountered the death of a loved one who resided within a RACF during the pandemic.
Not all participants studied had a relative that died due to COVID-19, but of those who did, the experience of grief varied.
Whilst some accepted the passing as inevitable, others were taken aback by the insidious progression of the virus.
“Some participants reported that death was expected and this is often in light of other health problems or decline that a resident may have had for some time,” Hack says.
“But other participants were quite shocked and surprised at the course of illness… they reported that their loved one did not feel overly unwell, but then as can happen with COVID, they did deteriorate over time.”
Adding to participants’ grief was the wider socio-political context brought about by the pandemic.
“Participants were subject to additional stressors within their own social, occupational and personal network and community from the effects of lockdown,” Hack says.
Lockdowns were noted as a significant barrier to next-of-kin and carers’ participation in the end of life care process, with the report documenting their poignant insights.
“I wish that I was with her, it hurts knowing she was on her own when she went,” one participant says.
Hack confirms that lack of visitation presented as the main source of distress for next of kin and carers.
“Many aged care facilities had actually continued to restrict visitation from the first wave, resulting in a prolonged lockdown preceding the second wave of COVID, so that stress around loss of visitation was really noted especially around the end of life.”
Added distress was evident within families where a loved one was living with dementia.
“People who had cognitive impairment could be at more of a disadvantage, as were those with hearing impairment or visual impairment and those with non-English speaking backgrounds who relied on visiting family and next of kin for interpreting and things like that.”
The report reads that the critical caring role of next-of-kin and carers needs greater recognition during pandemics.
If visitations cannot be permitted, researchers recommended greater staffing, but noted that “this is not equivalent to visits from a loved one”.
“These residents were, and are, often very important parts of their immediate and extended family… and to have those moments at the end of life with that person is therefore very much valued,” Hack says.
“Ideally, in a normal situation, there’s time for family members to visit, to bring items of importance, to be together, to hold their loved one’s hand – and that was all taken away.”
Hack says that after their loved ones’ passing, many experienced “a sense of disenfranchised grief”, with many participants unable to seek solace and closure from the usual rituals, such as funerals.
“Some participants expressed that what had happened had been unacknowledged and unvalidated.”
Hack and colleagues concluded in their report that there is a need for stronger integration of palliative care services within RACFs.
“The data that we obtained in the interviews suggest that the provision of palliative care and bereavement support could be more consistent and improved in the future,” Hack says.
“I think it really reflects the recommendations that have subsequently been made since the conclusion of this project in the royal commission, that palliative care be core business of aged care facilities.”
Whilst the themes are universal, Hack cautions that her team’s research only focused on a localised group of individuals, living in Melbourne.
“It was a rapidly evolving time and resources were stretched, and the research represents, I would say, a snapshot of a unique context in one area in Australia during the COVID 19 pandemic,” she says.
“It would be worth revisiting the same study in the future, I think, in a different context and see what the findings would be.”